Danni recently caught up with Maria (33) a first time Mummy to 15-month-old Aria. When Maria was told Aria had to be tube-fed, she openly admits that she didn’t know enough about NG tube feeding (Nasogastric Feeding Tube). She felt very isolated being a new mum to a tube-fed baby, so she is keen to share her story in order to raise awareness on this subject. We believe that whether your child is tube-fed, breastfed or formula-fed all should be supported and celebrated equally.
Thank you so much for taking the time to talk to us, Maria. Could you please tell us about your daughter Aria? And why she needs to be tube-fed?
Aria is a lovable and happy toddler. She was born with low birth weight and was progressing slow and steady. At nine months old she had a still unknown infection with other serious infections on top of that. After months of fighting the infections, having tests and treatments at the amazing NHS hospital, Aria began to fall off the 4th centile line. This is when the Nasogastric tube (NG Tube) was fitted to support with Aria’s weight gain.
What is your daily routine with regards to feeding Aria? Are there checks/tests that need to be made before every feed?
Our daily feeding routine consists of following a feeding plan created by Aria’s fantastic paediatric dietician personally for Aria. Yes, there are checks and tests I must do before all feeds. I have to use a syringe to aspirate gastric fluid from Aria’s stomach through her ng tube. Then I test the fluid which will show the acidity in Aria’s stomach on a ph strip. Once the tested ph strip matches the ph colour scale between 2.5-5.5 were good to go with her feed. This is when the feed process begins. Aria’s feed is 220mls of prescription high-calorie milk four times a day with solids three times a day between ng tube feeds. When Aria is due a feed she will drink as much of the 220ml milk as she can orally. Whatever the amount of milk is left, that will go down her ng tube and must be finished with a flush of sterilised water at the end of every feed.
Does the tube require maintenance? Does it need to be changed regularly? Is this something you needed to be trained in?
The tube does require maintenance. Aria’s 75cm ng tube is measured from her stomach to her nostril. There are numbers on the ng tube. The number that is at her nostril, I have to make sure that it stays at that number so I know the tube is still in the right place. Daily I have to check that the tapes on her cheek aren’t irritating her (which they do most of the time) and that the tapes aren’t loose. The ng tube Aria uses can stay in for 90 days. I did have to be trained on how to use the ng tube and signed off by the Nurses whilst we were still in hospital before I could perform the procedure.
Are the weight and growth milestones different for a tube-fed baby?
In Aria’s case, our milestone goal is to get Aria back on the 2nd centile line.
How long will Aria require this tube? How do you start to introduce solids (obviously this will need to be in stages)?
For now, #tubie is here to stay with no given date on how long Aria requires her ng tube for. Aria is the boss! We’ll keep attending our hospital appointments and take each step to eventually not needing the tube. I’ve always maintained oral feeding with solids. The stage we’re at now is reintroducing more textured solids now she’s used to swallowing solids with the tube in her throat. The key for us is to make mealtimes as enjoyable and tasty as possible.
Can you tell us what the risks or possible complications of tube feeding are, please? Does Aria pull at it at all?
There can be huge risks with ng tube feeding such as the tube can move from the stomach and go into the lungs. This is also why you must test before every feed so the milk doesn’t go into the lungs. Luckily Aria is really good with her tube. When she does pull it out, it’s usually in her sleep. But the tube can be pulled out a number of times a day to a few times a week. Every time the tube comes out the community nurses will put a new ng tube back in.
Putting the tube back in is traumatic for Aria, myself and the nurses as you can imagine having a tube put through your nostril, down your oesophagus and into your stomach isn’t pleasant. I can be trained to put the tube down myself but for me personally this is something I don’t feel comfortable doing, so I cuddle Aria instead whilst the nurses carry out the procedure. I’ll be honest there are many times I have a little cry after the procedure with Aria as it’s so distressing to see your baby in so much discomfort. But we know it’s for the best and we will be forever grateful for the ng tube.
Does having the tube restrict any activities that you can do with Aria?
To make sure the ng tube doesn’t restrict any activities, bath time or through the night whilst Aria sleeps I like to make sure her tube is safe and not around her neck. I manage this with the ng feeding tube Bow I’ve created. I put the tube through the bow holes and clip the bow to Aria’s clothing or hair. Once the ng tube bow is set up Aria can enjoy her activities like her ballet class without any restrictions and do what all the other toddlers do in her class.
Do you find yourself having to explain to others about Aria’s need to be tube fed? Does this bother you or are you happy that people ask so that they can be educated?
Yes, I do, because like myself I didn’t know enough as to why a child would need to be tube-fed. Behind every tube-fed child there is an enormous amount of strength and courageous challenges of what themselves, parents and carers have been through.
I like and respect when people ask questions about Aria’s tube because this means I can educate and spread awareness about an amazing method of feeding my baby girl. #tubefeedingawareness
Is there much support available for tube feeding parents? Have you found your friends have been supportive?
I feel there could be more support available for tube feeding parents. For me personally, I had to join social media to find support. There are great tube feeding awareness support groups you can join on social media. I’ve found great support from parents of tube-fed children from across the world who I can share and relate with, which has had a huge positive impact on my life as a #tubieMum
My friends, family and work colleagues have all been supportive throughout our tube feeding journey.
If you would like to contact me or follow our blog you can @dolly_x_i on Instagram. There you will find all of the amazing #tubie groups, blogs and tube feeding clothing and accessories businesses I follow.
Thank you to all of the staff at The Starlight Unit at Wythenshawe NHS Hospital